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What it is

Sickle cell anemia is a congenital form of anemia. Normally, red blood cells are soft and round, but when children have sickle cell anemia, these cells become stiff, sticky, and crescent-shaped (or in the shape of a sickle; see photo left). That makes it difficult for the red blood cells to pass through small blood vessels and carry oxygen throughout the body.

In This Series

Symptoms

The lack of oxygen can cause a range of symptoms including fatigue, shortness of breath, rapid heart rate, paleness or jaundice, swelling (particularly of the hands and feet), pain, and serious infections. In severe cases, sickle cell anemia can lead to organ damage, delayed growth, vision problems, and strokes. Symptoms don’t usually begin to appear until a baby is four or five months old, but blood tests can diagnose the disorder immediately after birth. It can also be detected during pregnancy by testing a small sample of your amniotic fluid.

Causes

A child inherits the disorder when both parents carry a recessive sickle cell gene and pass it on. Symptoms often flare up when your little one has an infection, is stressed, or gets dehydrated.

How common it is

The gene is most common in people whose family originally came from Africa, Latin America, India, the Mediterranean, and Saudi Arabia. The Centers for Disease Control and Prevention (CDC) estimates that sickle-cell disease affects 90,000 to 100,000 Americans, occurring in about one in 500 African-American births and one in 36,000 Hispanic-American births.

Latest treatments

There is no surefire cure for sickle cell anemia, and there is no one-size-fits-all treatment. Treatments are usually focused on preventing complications and improving symptoms. Some kids may require blood transfusions, which help increase the number of normal red blood cells. Blood cells are produced in bone marrow, so in some severe cases doctors recommend a bone-marrow transplant — which involves replacing a child’s unhealthy bone marrow with a donor’s healthy bone marrow. Though a bone-marrow transplant is a possible cure for sickle cell anemia, it’s not easy to find a donor and the procedure carries life-threatening risks. Some children with sickle cell anemia also have trouble breathing. To help, doctors can prescribe extra oxygen (that your little one can breathe in through a mask).

What you can do

You can help keep your child’s symptoms at bay by making sure she eats a healthy diet, drinks plenty of water, exercises regularly, and doesn't get too stressed. Infections can be life-threatening for children with sickle cell anemia, so they usually begin taking penicillin daily when they are two months old up until at least age five to prevent infections. Another important way to cut the risk of infection: Staying on top of your little one’s immunization schedule.

Hope for the future

Promising experimental treatments include drugs that stop sickle cells from forming, gene therapy (in which normal genes are inserted into the bone marrow of someone with sickle cell disease to produce normal red blood cells), and nitric-oxide treatment (the gas is inhaled and helps stop sickle cells from clumping together). With information, counseling, and medical care, most children with sickle-cell anemia live fairly normal lives. If you’re interested in being on the forefront of new treatments and having your child be part of a clinical trial, visit the US National Institutes of Health.

Where to find help

There are numerous resources out there to help you stay informed and clued in to ways to keep your child healthy and comfortable. You can find support groups at: